Statment by Grace - Lilly Joy's Mam

I'm the mother of 4 beautiful daughters. Tragically one of them is in heaven. This is the story of Lilly's little life.

Hello, my name is Grace Sharp,

This picture of me and my beautiful baby girl Lilly Joy was taken on the 9th of December 2011. This was the proudest day of my life and moments after this picture was taken my baby slipped away in my arms. I knew this day would come as from my 19 week scan they had said she had lots of problems mainly with her heart as it only had 2 chambers instead of 4.

You may not believe this but this was not the worst day of my life. The worst day of my life was when I was 24 weeks pregnant and we came up here for a specialised scan. A doctor scanned me and then went off to get another more qualified doctor to scan me again and he said within 5 minutes of scanning me that my little girl was incompatible with life, she has trisomy 18 which is a 'lethal and fatal' syndrome.

I thought how can he say that she is incompatible with life?? She is alive ... her heart is beating against all the odds and she is wriggling and kicking inside of me. I could hardly breathe when he told me these words and started crying my eyes out he then straight away said he wanted to do an amniocenthesis which will tell us for sure that she has trisomy 18. I looked into his eyes and I knew that he knew she had Edwards syndrome and I didn't want to have the test done as I have always felt it has risks for miscarriage.

My whole womb contracted when they got 2cm into my skin and I told them very firmly to stop. The doctor told me to go and have some tea and come back to which I replied no amount of tea will make me take this test. He then told after this ordeal that with trisomy 18 babies they like to let the mothers go into natural labour and I said if I only get 20 min with my baby im having a c section. The crazy thing is c section are done every day and a normal part of life in a delivery ward and I had to fight to get mine as she was labelled incompatible with life.

I knew she would not survive a normal delivery with the fragile heart she had so I pushed for a c section and the doctors said that if I had the amnio done which I didn't want done anyway that I wouldn't have been allowed have a c section on lilly as I was the priority not her. How crazy is that ?? im a fit healthy young woman and my poor girl needs all the help she can get and they weren't willing to do it unless I fought me case and of course if I didn't have an amnio.

My question to everyone is : do people who have terminal cancer and are not given long to live get told they are incompatible with life that what they have is 'lethal and fatal'?? Or do they get told lets fight this with everything we know we can do??

My little girl was a fighter and she fought to stay here for 4 hours to say hello to her mother and father and then goodbye to them when her journey had ended. 4 hours was a short life but that was her life nonetheless

She was compatible with life and love and she is still compatible with life as she lives on in my mind and in my heart and in everyone else who knew and loved her. Incompatible with life is a very cruel phrase which has no meaning and it gives no hope. Doctors in these situations need more training and guidance on what to say as this term is most obviously not true as when a heart is beating they are alive and obviously compatible with life.

Thank you


Grace Sharp - mam to Lilly Joy Sharp